Poop issues and autism

[Viriditas]

I'm at the end of my rope dealing with poop with my almost-6-year-old autistic kiddo, and I'm looking for some ideas about where to go from here.

DS was potty trained at about 3 years, 3 months.  Things were great.  He was dry at night right off the bat.  He had some pee accidents, but those got fewer and fewer as the months went on.  He pooped regularly on the potty and very rarely had poop accidents, although he did usually refuse to poop anywhere but at home (first in his little potty, then on a Diego potty ring on the big toilet, which he still uses).

About a year later, he inexplicably started withholding his poops and becoming constipated.  This was a never-ending nightmare for over a year, involving changes in diet, various supplements, suppositories and the occasional enema when things got really backed up, and eventually laxatives.  We would be cleaning poop out of underwear 3 and 4 times a day and he almost never got a decent-sized bowel movement into the toilet.  We ended up putting him back in pull-ups for about 6 months to take the pressure off everyone.  I thought it would keep him from holding his poops in.  It helped a little, but he was still often constipated and stopped peeing on the toilet as well.  

About 3 months ago, we did a suppository (always a horrible, traumatic experience we all hate which makes him scream) to clear things out, and with regular laxatives, constant naked time, and regular times of day to sit on the toilet, we got him pooping regularly and easily on the toilet.  He had no problem with pee accidents, either, after 6 months of mostly going in pull-ups.  I thought our problems were over.  He was never constipated, despite us weaning him off the laxatives completely, and he got to the toilet on time almost all the time.  We had maybe 1-2 skid marks on his underwear a week (when it used to be much larger amounts of poop in his underwear multiple times a day).

Since then, we've been doing a lot of naked butt time in the house, since we find he remembers to go much more easily when he doesn't have pants on.  Occasionally when he was wearing pants a little would come out before he would remember to go, but then he would remember to go to the toilet on his own.  This was working great until about 2 weeks ago.  Then he started pooping in his pants again.  In the last week, we've been washing out 1-2 pairs of underwear a day.  He's not constipated, he just doesn't go to the toilet when he has to poop.  And even when he's naked, we've ended up with poop on the couch, floor, his legs and feet, etc. because he just doesn't seem to notice or care when poop starts coming out.

Mostly this happens when he's playing a game on the Wii or iPod, or when he's watching youtube videos (his favorite pastimes).  He gets so caught up in what he's doing that he doesn't listen to his body's signals.  We've instituted a rule that whenever he has a poop accident during screen time, all screens will go off for an hour.  But this doesn't seem to matter.

I'm not sure what to do at this point.  I really, really don't want to put him back in pull-ups, because that gives him permission to just ignore his body's signals and his responsibility to go to the toilet completely.  Plus it's expensive and wasteful.  I've tried drying out baby wipes and putting them in his underwear, but they just get bunched up and I have to wash out the underwear anyway. I'm so, so tired of cleaning stinky, nasty poop out of underwear constantly, and so is DH.  I really try to avoid lecturing DS about this or showing my frustration and disgust, as I know (at least I think) that he can't help it.  When he's focused, his body's signals just get subordinated.  But sometimes the frustration slips through. :(

Please tell me some of you have also gone through this and have some ideas about how to solve the problem or how to deal with it until it resolves itself.  

 

[foreverinbluejeans]

You could try diaper liners in his underwear. I know that's not a fix but some are biodegradable or flushable and make the mess not so bad.

Have you taken him to the doctor to be checked? I have had problems the last couple of months with asthma. I moved into an apartment and the neighbors smoke. I cough and cough and am urine incontinent. I've been to the asthma doctor and am using 4 inhalers. I wear the super dooper sanitary napkins. I have found that my stools come out really easy now (never did beford) in smaller pieces and I am almost stool incontinent when I cough and even when I don't cough. I used to only have a stool every couple of days and it was long. Just being exposed to smoke is messing up my whole body. Him being constipated and holding his stool in may have damaged or done something to his colon or anus and he may not be able to help himself. I know holding stool in can stretch the colon.

If it is a physical thing then it may be able to be treated or at least you will understand until it goes away.

[RiverTam]

Why are you cleaning his underwear? Why isn't he cleaning his own underwear?  When my son has an accident, we have  him take off his clothes in the bathroom and shower. After he gets dressed, he is responsible for getting a bag out of the recycling and putting his dirty clothes in it. He is then responsible for running a load of laundry with just those clothes in it. (Including Borax to kill any bacteria.) I supervise, but I don't do it for him.

I do intervene during screen time if I see him doing the potty dance. He doesn't want to stop sometimes, but I make him. I also limit his time to one hour before he has to take a break, go to the bathroom, and blink. He has to chose a different activity for at least an hour before he can go back to video games.

When DS has had accidents, he often has had an impaction even though he had a poop accident. The soft stuff squished out around the blockage. He didn't necessarily know that he needed to go. We does him with a laxative, if he's had an accident, just to make sure he is cleared out. (We've had too many hard, dry impaction problems at this point.) We get good results with Ducolax.

We also put him on the potty at regular intervals when he seems to be having problems. He has to do 10 minutes on the potty before school and 10 minutes on the potty before bed. We give him some  hot tea to stimulate peristalis at these times and it seems to help.

We also feed him a lot of yogurt and fruit. The yogurt regulates bacteria and yeast in the bowel. The fruit has fiber in it that helps him move his bowels and keeps it soft.

[Viriditas]

Thank you both for your responses. 

He actually hasn't been to the doctor in awhile.  He is terrified of the doctor, even though the most they have ever done to him is try to look in his ears.  And we have had a hard time finding someone we like (and who "gets" kids with autism) who accepts state insurance.  When he was chronically constipated, we knew he had encopresis, and we figured, which would be less traumatizing?  Doing an enema at home, or doing one at the doctor's office?  We can also give him laxatives at home.  We never got to a point where we felt more invasive procedures would be worth the trauma.

He has a very good, high-fiber, high-water diet (a little restrictive, but pretty good for such a picky kid).  And I know he's not impacted anymore.   I know what that looks like from the year+ we dealt with it, and he's getting out a normal amount of poop now, soft but formed, and without pain or straining.  It's a paying attention thing, I think.  I truly don't think he has any medical issues that are causing this, at this point.

We have talked about having him clean his own underwear.  It does seem like a logical way of making him more responsible for his own body.  But we're unsure if he's ready for that kind of responsibility.  He still has trouble dressing himself.  But I think involving him in the process is a good first step, at least.  We are also slowly putting more limits on screen time and steering him toward other activities, which I think will help.

I think diaper liners would shift around and get bunched up, just like the wipes did, but I'm going to try panty liners.  Really thin, cheap ones that will stick to his underwear.

I'm feeling less stressed about this.  I think venting helped, and taking a break from worrying about it for a few days.  Like DH always says, "We'll just find a way to deal with it for as long as we have to deal with it."

 

[buttercup]

My eldest daughter had similar issues when she was around 4-5 yrs, which was why it was challenging to PT her.  It was as if she just turned off her "I gotta go potty" sensory signal when her mind was focused on her fav activities which was art, blues clues, etc.  She had gastro issues (loose stools) and we corrected much of it when we started biomedical & dietary interventions.  I know you say his stools are fine and they probably are, but I just wanted to keep the gut issue an option if you decide to research that in the future.  I am really looking at it from a sensory issue standpoint that is related to health, ie probiotics, digestive enzymes or mineral deficinecy.   autism.com, talkingaboutcuringautism.com, http://www.enzymestuff.com/rtstools.htm, http://www.enzymestuff.com/rtsensorygut.htm

Also look at food allergies or intolerances - specifically dairy and gluten.  Is he consuming too much of a certain kind of food, ie drinks 40oz milk a day, prefers a lot of bread products, consumes massive amounts of  eggs.  Those are just things relating to his health to consider.  Next time he is at a doctor's visit, maybe ask if there is any concern.  I know he doesn't like doc visits, but just keep that in mind for the future.

I know how frustrating and exhausting this process can be.  My husband and I had a huge celebration (for just us because no one else understood) when we PT our youngest (who also has ASD) at 3.  In fact, we made it a priority after dealing with PT issues with our 2 older ASD kids.

(((HUGS)))

[Viriditas]

Thank you.  We have done a bunch of diet stuff.  He has never had dairy.  He has been off gluten for almost 2 years now.  He will have an occasional bite of eggs or something with eggs in it, but that's pretty rare and only very recent (we were egg-free until a couple months ago).  We tried cutting out soy as well for about 3 months at one point, but it didn't make any difference.  We have also done probiotics religiously in the past, as well as various mineral supplements, but it never made any difference and we simply can't afford expensive supplements right now.  I guess I just got tired of spending money we didn't have on things that weren't making a difference and seemed really based on speculation anyway, and everyone had something different to say about what we needed to be giving him or not giving him.  Cutting out gluten did help his behavioral/attention issues tremendously, though, and we've stuck with that.

Thanks for the links on enzymes.  I have been really burned out on food-supplements-autism stuff for awhile, but I think I can summon up the willpower to take a look, lol.  I really appreciate your input. :)

 

[muldey]

I am still dealing with this with ds,who is 10.He often has skids or more in his underwear,and he's a holder.When he does go it is a LOT.Like clogging the toilet lot.He refuses to wipe himself(I started a thread on that a little while ago,and am trying the suggestions I was given,and he still won't do it).He won't use toilet paper,so we use the flushable wipes.He still has a hard time dressing himself,unless it is a loose tshirt and jogging pants,which is all he will wear.He won't put his own socks on,and his shoes have to be loose and velcro(hard to find in a men's 7!He's a big boy).I think for him it is a sensory thing.He never liked to poop,socks and clothes have to feel a certain way.He didn't potty train until 5.I've tried a lot of different things,but nothing seems to help.I'm hoping we can do something before he goes to middle school next year!It's so frustrating.His little cousin,who is 7,tells him all the time,it's ok if you get messy,you can wash up.She's been wiping herself since she was potty trained.She's even tried to show him how to do it,but he wants nothing to do with it.Hopefully we'll figure out something soon.I hope you can too.

[RiverTam]

I just saw a suggestion for adults with autism and continence issues. The author said that some adults with autism have trouble feeling when they need to pee or poop. The solution is to set a cell phone alarm for every hour or two hours, and have the person go sit on the potty every time the alarm goes off. If they don't have to go, they don't have to go, but if they do, it saves a lot of clothing.